A decade of psychiatric misdiagnosis: reconstruction and reconciliation

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I’ve had a few thoughts running through my head lately relevant to the themes I used to write about here. I doubt this is the return of any regular updating, but wanted to get some of this out to anyone who may still have me in their reader.

First, our son was born in late May, and he is absolutely healthy, vibrant and stunning. He is eight months old now, growing like crazy, smiling, laughing and bringing much joy to our lives. His big sister has taken to her new role in the family with gusto and we are all adjusting to life as a family of four.

Although he is here and we are now all healthy and recovered, his arrival was not without struggle. Late in pregnancy, at about 34 weeks gestation, I was diagnosed with a liver condition called obstetric cholestasis (or Intrahepatic Cholestasis of Pregnancy, ICP). It results in very high bile levels in the blood and poses a substantial danger to the baby, including extremely high risk of preterm labor (some estimates as high as 60-70%) and 1-2% stillbirth risk (which is astonishingly high compared to baseline rates). However, the bulk of these risks to the baby can be avoided if you deliver 2-4 weeks early. We found estimates that said this condition occurs in about 1 in 1000 US pregnancies, so it’s rare, but not all that rare. With numbers like that, you almost definitely know someone who knows someone who had this. Virtually the only presenting symptom is completely insane itching over your entire body. I was itching for several weeks before we figured out what was wrong, and I would not wish that itching on my worst enemy. It was truly horrid. I could not sleep. By the time I was diagnosed, a new body part was itching every day. My eyes itched. The inside of my nose itched. Nothing helped. It was such a strange and overwhelming sense of agony and loss of control.

With the diagnosis, our midwife was in agreement with us that our home birth was out the window. At 34 weeks, plans changed to an early hospital induction, sometime between 36 and 38 weeks with my previously-back-up OB. Suddenly, I was not going to labor and birth at home, where I felt safe, away from doctors and overzealous medical care, surrounded by smart and supportive women. I was going to be hooked up to IV’s, with an artificially induced labor that was less likely to succeed due to the necessity of an early delivery, trying my best to avoid the surgical birth I feared.

The birth actually ended up going remarkably well, though it took over three days and looked for a while there like my son would be born via C-section for a failed induction. But the doctors were patient (for doctors anyway) and with some amazing support from my wife, our doula, our homebirth midwife, and some lovely nurses, my son’s birth ended up being one of the most amazing accomplishments and experiences of my life, both despite and because of the obstacles we faced along the way.

I knew since even before I got pregnant that I did not want to birth in a hospital. One of the many contributing reasons that I wanted to stay as far from the hospital as possible was that, on the whole, I simply cannot trust doctors, in large part because of my experiences with psychiatry.

And, in a delightful ironic twist, I have strong suspicions that my years of unnecessary over-medication with psychiatric drugs are exactly what landed me in the hospital for my son’s birth.

To be clear there are absolutely no medical studies linking exposure to psychiatric medication with obstetric cholestasis, certainly not when one’s last exposure to psychiatric drugs was two years prior to pregnancy. But I was on tegretol for 8 years and Zyprexa for nearly two, both of which are known to cause liver damage. In addition I was on a rotating display of SSRI’s and benzodiazepines. That’s a lot for a liver to handle, and I believe it left my liver in worse shape, and less able to handle the stresses of pregnancy. Can I prove it? No. Will it ever actually be studied? Probably not. Did I tell or ask my doctor about my suspicions? No way in hell.

I chose my back up hospital precisely because they did not have access to records from my psychiatric care (and for their somewhat lower c-section rate). There’s no way I was going to head into a birth, especially a hospital birth, giving the doctors and nurses any reason to doubt me. I have no doubt that if they had known, I would not have been treated nearly as well, especially when, like a crazy lady, I insisted on continuing to labor without medication for over three days. I actually came to like and respect my doctor very much. She provided me with excellent care for a condition that many women have to research themselves because the doctors just don’t know about it. She genuinely respected us. I’ve found myself a few times lately wishing that I could tell her what I think led to the cholestasis, perhaps so that she could report it, or at least file it away in her head in case she started to notice a pattern. But I always stop. I’m not willing to risk it and the only other hospital in town has my records.

If you found this post and are in similar shoes, maybe by searching “ICP” and “psychiatric drugs” or “psych meds” or “zyprexa” or “tegretol,” know that you can contact me. I still read this e-mail even when I’m not posting. I’ll at least commiserate with you about that damn itching, and I can tell you that your baby will be OK.

The title of this post is the search that I did for years, trying to find other people who had done what I was aspiring to do, people who had been previously diagnosed as bipolar for whatever reason, but had managed to get off of psychiatric meds successfully. Most of the stories out there are horror stories, stories of “how I tried to get off meds but it was an awful idea because then I realized how sick I am and no one should ever ever ever get off their meds. It’s irresponsible.” I was sure there must be someone else, and eventually I did find writing and success stories collected by Gianna and Philip Dawdy’s incisive commentary and personal withdrawal experiences to sustain me. For the most part I felt like I was going it alone. I felt invisible, and these days, in some ways I feel even more invisible, though in a way this is just what I had hoped for, a life where I am no longer defined by a diagnosis and hemmed in by medications that took away my health, my ability to think, my spirit, and my laughter.

I’m sure there must be more people like me out there. I have managed to hear of a few others, people who managed to escape, who went on to successful family life and employment. But I’m guessing most of us just fade into the woodwork. I certainly have. The psychiatric establishment has no idea that people like me exist, and insist on giving young people, even children, a dire prognosis along with their questionable bipolar diagnosis. Some of my closest friends don’t even know my history, though I am working towards being more open with my views, and eventually perhaps my story in real life. For now, I hope that every now an then someone searching for hope might happen by this writing, and believe that freedom is possible.

My first day free of psychiatric medication was Nov 22nd 2006. My daughter was almost 5 months old. I had been taking some form of psychiatric medication for eight and a half years. During the three 1/2 years it took to complete withdrawal, I got married, became a mother and completed my Ph.D. Since that time, thanks to intensive acupuncture treatment, my body has healed to the point that I am now able to carry our second child.

Of all I have done in life, second only to becoming a mother, gaining freedom from psychiatric medications and my misdiagnosis of bipolar disorder is the accomplishment of which I am most proud. I hate to think where I would be today, had I not started down that road, prompted by that original frightening read of Robert Whitaker’s Mad in America. I am not at all sure that my marriage would have survived continued heavy medication. Agnes and I might not be parents together. I might not be working in my current field. I almost certainly would not be carrying our second child, something I have wanted to do for many years. I will always be grateful to Robert Whitaker for writing the truth, and most of all to my wife, who saw through the psychiatric bullshit, understood withdrawal symptoms for exactly what they were, wouldn’t accept poor treatment from me even when we both believed I was “sick,” and always encouraged me towards the most healthy version of myself.

This is my last post here. I have moved on to other chapters of my life. But for those who have happened here for the first time you can find out more about my experiences understanding the roots of my misdiagnosis with bipolar disorder at age 20, how I escaped from the trap of permanent psychiatric medication, and some of the work I did to repair ongoing damage from that original diagnosis by reading through the archives. I will leave comments open, and check back periodically. I will continue to read the e-mail address listed on the side bar, and absolutely welcome hearing from folks who happen by here.

I’ve written bits and pieces here about how I why I withdrew from individual psychiatric medications. However, I haven’t provided the details of how I actually did it, how I worked with my prescribing doctor through the process, or why I chose to withdraw the way I did for each drug. Please don’t consider this any kind of “how-to.” Withdrawing from psychiatric drugs is dangerous, though not necessarily for the reasons psychiatry would like you to believe: that your original symptoms are returning, and that adverse events experienced during withdrawal are just reminders of the severity of your “underlying illness.” That may be true for some, but more universally and more pressing, no matter what the original reason for the prescription, these drugs cause profound changes in the brain and body, and to remove them, suddenly or slowly, causes further changes as the body readjusts to their absence. In general, in both academic settings and in my own experience of treatment, I have found that prescribers of these drugs are not aware of the possible severity of withdrawal symptoms, the breadth of possible withdrawal symptoms, or the appropriate time course for a sensible withdrawal schedule. In spring of 2003, at the end of my first year of graduate school, I was taking zyprexa, celexa, klonopin (only intermittently), and Tegretol. Drug by drug, here is how I got from this down to zero.
Zyprexa Withdrawal:

Original dose: 10 mg/day

How long had I been on the drug? about 1 1/2 years

Why did I choose to withdraw? Extreme concern about adverse events, particularly diabetes risk, especially given my extreme weight gain on the drug (30 lbs onto a previously slender 5’4″ frame), and risk of permanent movement disorders (tardive dyskenesia). I was particularly concerned once I learned the prescription had been overzealous off-label treatment of anxiety, which seemed like overkill once I knew the risks.

What did I tell my prescriber? I told her my health concerns. At that point I still believed I was bipolar and in need of heavy medication. I just didn’t want to be on zyprexa anymore.

Withdrawal Symptoms: I did not experience withdrawal symptoms until after the final drop, but after that they were extreme. Severe disabling tremors (holding a fork to eat was difficult), heart palpitations, panic attacks (I had never previously experienced these), crippling anxiety (far worse than the anxiety that led to the original prescription), insomnia, overall physical malaise, fatique, loss of ability to concentrate.

How long did withdrawal symptoms last? About 4-6 months after my final dose. There was some concern that the tremors might be permanent, but thankfully they faded. However, I do still have some tremors in stressful situations or with fatigue. I don’t recall such tremors from before drug treatment, but it is hard to say if this is truly permanent damage from the drug. At several points, my prescriber offered to reinstate zyprexa to solve my withdrawal symptoms, while fully acknowledging they were signs of physical dependence, not necessarily symptoms requiring drug treatment. I was so miserable I considered it, but I’m stubborn and stuck it out.

Unexpected fallout: I became heavily dependent on the Klonopin that I had previously used only occassionally in order to have some semblance of control over the anxiety that withdrawal induced. I also immediately lost all the weight I gained on zyprexa and more. I lost over 30 pounds within one month of my final dose. My period also returned to a more regular schedule. I hadn’t noticed how infrequent it was until it came back, and had never been informed that this was a common side effect of zyprexa.

What did I do wrong? I tapered the drug much much much too fast. Note however, my taper was far slower than that suggested by my prescribing doctor. 6 months, or even longer, would have been a more appropriate taper, and I would have ignored advice not to cut unscored pills. My final drop in dose needed to be much smaller than the smallest pill available for sale (2.5 mg).

At this point, I changed doctors, and my new prescriber was concerned that an SSRI (Celexa) was not appropriate. She weaned me quickly off of the drug and introduced lamictal. This change was uneventful, or perhaps it just paled in comparison to the zyprexa withdrawal.
Klonipin withdrawal

Original dose: 3 mg

How long had I been on the drug? Off and on on xanax or klonopin for four 1/2 years

Why did I choose to withdraw? I was heavily dependent on the drug after increasing its use during my zyprexa withdrawal. I found it no longer provided any relief, even at a fairly high dose (I believe 3 mg/day). I was growing suspicious that the drug was actually causing me increased anxiety between doses.

What did I tell my prescriber? Exactly the above. She was amenable to withdrawing the drug, I think because psychiatrists are trained to be cautious about dependence on benzodiazapenes.

Length of taper: About 6 months, very incremental drops in dose, timing drops in dose to correspond to school breaks or times of reduced stress. Until my final fraction of a milligram, I would remain at each newer low dose until my withdrawal symptoms abated. Near the end, this became impossible as the withdrawal symptoms were constant. I was on a tiny dose and decided to cut my losses and do the final withdrawal all at once. I believe this final drop was from about a quarter of a .5mg pill.

Withdrawal Symptoms: Crippling throbbing headaches that started at mid-day and lasted into the night.

How long did withdrawal symptoms last? At first, with each drop in dose the headaches lasted about a week, but lasted longer and longer as my dosage drop. Ultimately, the headaches lasted 2-3 months after my final dose.

Unexpected fallout: I became addicted to alternating doses of tylenol and naproxen in order to barely control my headaches, both taken at their maximum possible daily doses. I had to taper carefully off of these pain relievers several months after my final dose of klonopin. This much less dramatic withdrawal also resulted in headaches, but for a much shorter period of time.

Tegretol Withdrawal:

Original dose: 1000 mg / day

How long had I been on the drug? About 8 years

Why did I choose to withdraw? I didn’t want to be on drugs anymore. I had completed a solid round of Cognitive Behavioral Therapy, and was functioning so much better than I had when I was on heavy doses of drugs. I was growing suspicious that the drugs in general were doing more harm than good. I was starting to question the circumstances of my original diagnosis, and to wonder if I was capable of living without drugs.

What did I tell my prescriber? That I was concerned about long term effects of tegretol on my blood work (I had longstanding low white blood cell count), I was on a maximal dose of the drug, but my blood level was now below “therapeutic” (this happens with tegretol frequently, because your body gets better at efficiently removing it from your system over time), so it’s efficacy was likely minimal at best in any case. I was doing extremely well and was symptom free, and wanted to see if I would be fine on a single remaining drug (lamictal).

Length of taper: about 6 months, timing drops in dose to correspond to school breaks or times of reduced stress.

Withdrawal Symptoms: Increased anxiety immediately after each drop in dose

How long did withdrawal symptoms last? Not long, perhaps a week after each drop in dose, and about two weeks after my final dose

Unexpected fallout: I started to laugh again.

Lamictal Withdrawal:

Original Dose: 250 mg/day

How long had I been on the drug? About three years

Why did I choose to withdraw? I was healthier than I had been since childhood, both mentally and physically. I was deeply questioning the basis of my diagnosis and no longer believed I was mentally ill. I hadn’t had anything you could remotely call a symptom in 2 1/2 years, even with the stress of withdrawal.

What did I tell my prescriber? I was planning to try to get pregnant in one year (which was true), and wanted to be free of meds well before I tried, especially since I was doing so well, in order to make sure I was stable off meds prior to pregnancy

Length of taper: About 7-8 months, but two of these months were a pause in withdrawal near the time of my daughter’s birth (my wife carried and birthed our daughter).

Withdrawal Symptoms: Minimal increase in anxiety and slight insomnia.

How long did withdrawal symptoms last? A few days after each drop in dose, including the final drop in dose. My Lamicatal withdrawal was virtually pain free, though I count myself lucky, as I have read many horror stories about the stress of lamictal withdrawal.

Apologies for the long absence, so let me start by saying that I’m fine, Agnes is fine, kiddo is fine, and new potential baby is fine (I just cleared the 14 week first trimester hurdle…now if I could just stop throwing up). However, we have all been tired and sick (alas, such is cold season with a toddler).

When I started this blog, I knew it probably wouldn’t be forever. In many ways, the role of the old diagnosis in my life is a story that has an end, and for that I am very grateful. The longer I go, the more the importance fades, even though the experience has dramatically colored the way that I continue to interact with the world, parent and work.

I fear I am running out of things to say here, and will likely officially stop writing sometime soon (as opposed to just unofficially not writing for over a month). When I go, I’ll leave this up, for any folks out there, searching as I did for a long time, for SOMEONE who managed to escape the bipolar mill, and have a healthy med-free life. So what I’d like to know from all two of my readers (OK, maybe 3 or 4), is what is left to say? Is there anything that you are wondering? Burning questions? Is there something that’s been critical for you, but I’ve completely left out?

Agnes and I have been thinking and talking more about what I wrote about in the last post, in terms of figuring out how to support each other as things shift and energy wanes during pregnancy , and how all of this shifting brings up old patterns we’d prefer to let lie. In practical matters, we’ve tried to reduce the number of chores that need doing (nixing cloth diapers, at this point just one per night, but that’s still one less load of laundry every couple weeks, getting take out once a week, paper plates on Shabbat. The envioronment may suffer a bit, but we don’t drive a car, so I appeal to that for guilt reduction) and that seems to be helping both of us get a bit more breathing room and time for rest.

One thing Agnes mentioned is that some of her frustration and impatience with me early on was actually about realizing this pregnancy isn’t about her. I’ve been in her shoes for our first, and I know that it can be really hard to feel sidelined during pregnancy, as the not-pregnant expecting mom. I remember feeling excited, but also left out, and tired from all of the physical work I was doing to keep us afloat during Agnes’s pregnancy (truly, I did EVERYTHING). It is a much much different experience than pregnancy, and not completely in a good way, even though once you get to the parenting piece it is great. I could seriously write a book about the dynamics of being a two-mom family, but I’ll refrain here. All I’m really saying, is that Agnes was having some stuff going on that was about her, and about finding her footing for this pregnancy, and starting to process that it isn’t exactly the same this time, even though once said baby arrives, we’ll share the caretaking and she’ll be a full mom, just like I was with our first.

But what is interesting here is that neither of us saw that until a few weeks later. At the time, we saw me being too needy and Agnes getting impatient with me because I’ve worn her out too much over the years. That’s what we saw, because that’s what we were in the habit of seeing. But that wasn’t the situation. I was needy, because, hell, I’m pregnant and exhausted and feel like crap. Agnes was feeling impatient, not because of what I’ve done wrong in the past, but because she is dealing with her own stuff around this pregnancy, and that was sapping her resources. So completely reasonable. And so not my fault. Realizing this, and taking a real look at what she’s experiencing now, gave us a new perspective, but also gave us pause. Why were both of us so quick to jump in and blame me? Maybe we weren’t blaming the me now, but we were blaming the me of several years ago. We were saying that somehow because I was just too difficult before, Agnes couldn’t be expected to have many resources left now. I think we may have been appealing to a habit of interpretation, rather than seeing actual damage to our relationship from the past. We already know Agnes is less likely to see the forest for the trees when it comes to her own emotional state, or at least that it sometimes takes her longer to put two and two together. Maybe we now have a bit of a clue as to how to tell when something is going on for her. If it seems like I’m pushing her buttons, it may not be that I actually am. It may be that she’s actually has something going on herself that she hasn’t quite pinned down yet.

There’s of course more going on here. There always is. But we felt like this was kind of a breakthrough, and maybe a tool to use as we move on and try to build new patterns when we hit rough patches.

Things are moving along here as one expects them to. I’m at seven weeks today. I feel pretty sick most of the time. I vacillate between feeling like I’m on the verge of puking (or actually puking) and crying, all of which they tell me is par for the course, and does get better eventually.

Agnes is holding up mostly OK so far, though she is definitely carrying a bigger burden around the house, which is strange for us. We have a lot of identity tied up in sharing work equally, and I really hate not being able to pull my weight. I get that it’s temporary, and sure, I did everything back when she was pregnant with our first, but there is ever so much more to do now that we have a toddler and only barely stay this side of complete chaos as it is. We’re trying to lower standards (we already thought they were pretty low), and hunker down into survival mode, and I’m trying very hard not to feel guilty, but it’s not easy. I think we just haven’t figured out what the new normal is…and I guess that will be a moving target for some time to come.

I’m finding the emotional pieces of this very difficult, and I think it is bringing up some old patterns in our relationship that I’d rather not revisit. Back when Agnes and I were first together over 7 years ago, I believed I was bipolar, and so did she. This whole re-evaluation of my care and diagnosis, and withdrawal from meds is her story, too. She’s been there from the beginning. From the start, there was a disturbing caretaker aspect to our relationship that we eventually kicked. When I got into a bad spot, I really could suck the life out of our relationship, demanding more and more attention, behaving less and less respectfully and reasonably. And yes I was in pain, but I really could run through Agnes’s rather remarkable supply of personal resources pretty quickly. The worst time for us in this respect was when I was withdrawing from Zyprexa. It sucked both of us dry, and honestly, when I think back, I’m amazed that our relationship survived. I think the fact that it did speaks well for both of us, ultimately. After years of this, a bad day or any overreaction on my part could spark immediate aggravation and annoyance on Agnes’s part, and I can’t really blame her. Now that we’ve moved to being more equals in this relationship, now that I’m not “the sick one” that dynamic hardly ever comes up, but I fear my melancholy during these last few weeks may be bringing it out again.

I keep telling myself that this is 100% normal. I am so not even anywhere removed from the average first trimester experience, but I fear I’m slipping back into old behaviors, and even if I’m not, I can sense sometimes that Agnes’s patience with my tearfulness is limited. And I don’t want to sound like she’s not being supportive. She absolutely is. And she’s as excited and scared about this as I am. But that old dynamic is haunting us, and I’m not sure how to nix it. Until now, the way I nixed it was by being healthy, independent and supportive of Agnes, and pulling my weight. But now that my energy is so low, my tears so close to the surface, and I find myself in a position of actually needing to be taken care of, I find myself at a loss for how to move forward in a healthy way. I don’t want to be who I was before.